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Brain tumours kill more children and adults under the age of 40 than any other cancer

New Lib Dem leader, supporting the AMRC, meetings and stories – our week in campaigning

by Hugh Adams

I failed to note the election of Sir Edward Davey as new Liberal Democrat leader last week – an unintentional omission. Of course, we seek to engage with all of our elected representatives wherever they sit and whoever they represent. I found out a little more about Ed Davey and his caring agenda from this newspaper profile and his real life experiences, caring for both his mother from a young age and his son, make an engaging read, and an aid to understanding him better.

Things of interest that have happened this week include:

  • Cancer Research UK and the US Federal Government’s National Cancer Institute (NCI) announcing the founding of the Cancer Grand Challenges initiative, which will target the growing global cancer burden by “addressing critical roadblocks in research”.
  • On the day that Parliament returned (Tuesday) a series of the oral parliamentary questions was tabled for Department of Health and Social Care Ministers including a question on alternative therapies for cancer treatments from Christian Matheson MP (Labour, City of Chester). The full question asked “What plans he has to introduce additional regulations for practitioners of alternative therapies for cancer treatment” and the reply as reported in Hansard is here. With the lack of treatment options for brain tumour patients being a real concern, and the filling of this space with therapies that haven’t been reviewed with vigour and best practice, this is an area we do keep an eye on.
  • The Association of Medical Research Charities (AMRC), of whom we are proud to be a member, continues to be very active. This week it was the force behind a letter from industry (meaning in this case the Pharmaceutical industry) urging the Prime Minister to protect charity research – find out more and read the letter in full here.  Wednesday will see a further increase in public pressure on Government as the Department of Business, Energy and the Industrial Strategy (BEIS) is asked to protect charity research. Those of you on Twitter can help the AMRC with this on Wednesday by tweeting;
  • Without support from Government, charity research funding will be cut by 40% over the next year, slowing vital breakthroughs. @beisgovuk must protect charity #ResearchAtRisk so that @braintumourrsch can continue to deliver a better future for us all bit.ly/3fzj9Eg

OR

  • Without support from Government charity research funding will be cut by 40% over the next year, limiting improvements to the nation’s health. @beisgovuk must protect charity #ResearchAtRisk so that @braintumourrsch can help the UK recover from the pandemic bit.ly/3fzj9Eg
  • Also, on Wednesday we will be keeping a close eye on the House of Lords where Lord Patel has tabled a debate to discuss the report from the Science and Technology Committee on 'science research funding in universities'. The AMRC has produced a briefing document ahead of this debate. The briefing is an opportunity for medical research charities to outline the impact Covid-19 is having on the sector and we are delighted to co-badge this document (basically co-badging means our logo is on the document showing that we are in agreement with the contents).

Even though it was a short week for me it is important to always maintain visibility and have the voice of the brain tumour community heard so I did attend meetings for;

  • The Scottish Cancer Coalition
    • One area of discussion was a digital strategy to enable Coalition members to communicate effectively with key stakeholders including patients, families, policy makers and politicians. The combined digital force of Scotland’s national cancer charities will help drive engagement for awareness months and key events such as Brain Tumour Awareness Month.   
  • All.Can - This is an international multi-stakeholder not-for-profit organisation working to improve the efficiency of cancer care by focusing on what matters to patients.
  • NHS England and their monthly Cancer Charity Webinar

       … however the most fun this week was to go out and photograph Lily Hawkins and her family – Lily’s is a great story – please do read more here and don’t forget we will help you tell your brain tumour stories – just let me know if it is something you’d like to do (hugh@braintumourresearch.org).

You can’t underestimate the power your stories have. Another great example came this week. You can read James and Nicola’s story here – their MP did and tweeted about it. I saw that tweet and asked the MP to visit our research centre at Plymouth – an invitation he said that he’d love to accept.

These are the steps we need to make; these connections are the building blocks for real change to happen.

Related reading:

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